Wednesday, October 20, 2010

2 Years Today....What I wish I knew then..

Dear past Me,

Today is the day that your life and your families life will change. October 21, 2008 Justice was diagnosed with Type 1 diabetes. Admitted to the ICU with DKA just 72 hours of no alarming symptoms. But for that whole traumatic story click HERE .I cant write it again. Today on our 2 year diaversary with this unwelcomed house guest or unplanned child as we call it I think of all things lost and found.

First let me tell you, me, whatever this disease is way more complicated and troubling then the doctors are telling you. Even with careful carb counting and weigh foods, and never missing a shot or meal, things dont always go as planned. Yes you will get the hang of it so to speak but when they say manageable they mean NOT terminal. That is all. You will see Justice cry more than you ever want, you will see him battle lows that leave him feeling week and confused and highs that leave him combative and  angry. THIS IS NOT YOUR FAULT. It is the D. You will actually get him a pump, without insurance. YES! It will be life changing but it will take time. It will not be an overnight miracle that you are hoping for, but once you understand it and feel confident in it and yourself it will be amazing. Again, this does not mean that Diabetes is now easy, just easier in a way. I am warning you now this disease will consume you day in and day out. The first year wont be as bad as the second in some ways. You'll know more in the second leaving you more empowered but also more to worry about, I dont know if that makes sense.  I think with MDI there was a little more freedom for J, in some ways, less checks and less worry of ketones etc. But way more lows which was awful and scary in a way I cannot explain. Not to mention it wasn't until the second year that you found the DOC and realized how complex this thing was. So the second year is kinda where things changed for the better too. You and Biggah know what you're doing and feel confident in taking care of J 100%.  Like I said endos, and ERs dont tell you how evil pasta, rice and some sweets are. They dont tell you how he will cry, or lose memory or how ketones can appear with a sugar of 45 leaving you feeling helpless. But you will see. You will see what a son of  a bitch this D thing is and how some nights you cry yourself to sleep or in the shower so that your son cant hear you. BUT YOU WILL BE OK. JUSTICE WILL BE OK.

Just remember its not easy, but you can do it. Theres so much more I want to tell you, But to be honest you dont have the time to read it all right now and I dont want to overwhelm you. Below are some warnings, and some tips and well just shit you should know. Alexis today is the day you and Biggah become Pancreas' and the day you will find a new you. A more tired you, more worried you, sometimes a sadder you, but definitely a STRONGER, more COURAGEOUS you.

Now this part of the letter is for you and maybe your new DOC friends to read, and those outside the DOC who may need to know what you're dealing with....

Diabetes can be a lonely disease. Not just for the one living with it but the type 3 (caretaker or parent) as well. Justice, my husband, Synsyre and I have lost things which before we held so dear. Honestly we have lost friends. Yea i know. Apparently this disease is too much for others to hear about "all" the time. Insert the word bitch here. But yes I've heard this. Also it appears that these so called friends don't know how to handle the fact that what Justice may be going through is slightly more important than their lil one falling down at the moment. So they act as if its not important at all. Even telling others how its enough already with all the D talk. Yes. This happened. As Biggah said FUCK EM. Kids too. Making fun leave him out and not always realizing how cruel they can be. Yes. Diabetes scares away friends, Or as my smart husband says it exposes the true ones is all.

Sleep. I am now going on I don't know how many years of no sleep. It seems like once we started sleeping D came in and took it back. Synsyre was only 3 when J was diagnosed so we had just got him into a real routine and he was sleeping all night in his own bed. Now well we are exhausted. Regardless of what J's sugars are at bedtime we always check him, at midnight 3am and 6ish. Some nights way more depending on how crazy sugars are. This is just the standard of no sleep. Lets not forget resistant lows or ,middle of the night site changes and sometimes just the sheer panic of a low will keep you up all night. Can you imagine trying to sleep with the fear of losing your child to a low? Sleep lost.

Money. Until August 2010 Justice had no insurance everything was cash pay.Same goes for Synsyre, and well Biggah and I still have none.  I cant count how many times we had no gas in the car or hardly any food due to the price of strips. Insurance companies leave you to die. Almost 2 years of no insurance, no help ,scraping change for strips, taking out of the rent for lab work we have no money. Of course it went to whats needed to keep my baby alive so I wouldn't have it any other way. Its just awful that people must choose between living...and living. Explaining why we cant get the expensive fresh veggies and fruit, or why they cant go a kids birthday party for lack of money for a gift due to it going to life saving supplies. Which of course is more important, but you explain to a kid who already sacrifices so much of his normality and childhood why he has to sacrifice more. Money.

 Freedom. All of ours. Biggah and I have not gone out on a date or done anything alone in 2 years aside from shopping now when both kids are in school. Justice can't just go play or swim or shower or eat or well do anything without D playing a major part. Too low to play, too high to eat, ketones from a cold so he cant disconnect for the shower.  Then  of course the constant worry, the constant checks, constant basal changes, he never gets a chance to just be. It even stops Syn from doing things. If J is low or high and cant play or eat well neither can Synsyre. We have done this to unite them as a team and so that Justice never resents Synsyre but now its the other way around. Basically we have lost the freedom to be carefree and watch our son play and smile without fear of lows or future complications, or fear of not having the life sustaining supplies he must have. This is not to sadden anyone or get pity but these things are the harsh reality of living with Type 1 diabetes. Freedom lost.

BUT......we have found a family in strangers. Help and support from people we have never met and maybe never even will.  Family.

We have found purpose. I have made it my mission to not only educate others of this disease but to assist in improving type the life of all types 1s until a cure is found.  Purpose.

I have seen my 8 year old son become a MAN before most kids even dream of it. I have seen my 5 year old learn compassion, and how to give without expecting in return. I have seen strength in my family that god knew we had but we needed D to find. Strength.

I have fell in love with my husband all over again. For he is he rock that keeps this OCD D mom calm and always feeling like its going to be ok.

I have learned that I am an amazing mother, I am a Pancreas. And although that wasn't the job I thought I would be doing when I gave birth to this amazing little boy it is the job that god knew I could handle and the job he knew no one else could do like me. I was put here to be a D mom. Justice was intended to be my D son. I see that now.

This doesn't mean I dont loathe this fucking disease. Because believe me I do, I want to straight drop kick it in its throat and beat it to a pulp. But its my sons disease, therefore its my disease, my husbands and even Synsyres. We must learn to live with it and accept that this is what it is and make our life just as fulfilling as if that diagnosis on 10/21/08 never took place.

And that is my wish on this D day. That every day lived with D is just as happy as a day that wasn't for Justice and my family.

This is the letter I wish I could go back in time and give myself 2 years ago.

Meanwhile...........In another state, in the same month, on the same day, in the same year, another young boy, named Jus as well, was going through the exact same thing....


Reyna said...

An eloquent letter. I wish I could have received this 4+ years ago when Joe was diagnosed. Every word of it is so true Alexis. Every word.

I hope today is a happy day for you and your beautiful family. I loved the part where you said "I was put here to be a D Mom and Justice to be my D Son. I see that now."


Lora said...

It is so true that you find out who your FRIENDS are. Heck, even some family members could be put into the same category as those so called friends.

Great letter D-Mama-twin

htimm=) said...

Hi Alexis I found your blog from the link on Lora's. Great blog on your diaversary. Great letter! My daughter was dx in March of 2010. We have been on this journey for 7 months now. I am always inspired by those who have been there, and done that. You give me hope that there will be days when the tears and frustrations are fewer and farther between. I also don't feel quite as alone knowing that even though fewer and farther between that they are still there and there are days that no matter how you toss the dice that diabetes is a bitch!

Laura said...

You are a wonderful friend and I am so damn glad we met even if it was stupid D that brought us together.

Your post is amazing. It's so true - if I had only known then what I know now. WOW!!

Love you girl and your totally amazing family!

Thinking about you today!

Wendy said...

What a beautiful post!!!! BEAUTIFUL! God bless and keep writing!!!!

Nicole said...

What a wonderful post and like I said on Lora's post what a wonderful idea to link together!!

I hope that you and your family had a great day!!

Celebrate With Us!